Wednesday, March 25, 2009

Jonah had a really horrible time during his bandage change tonight. They lowered his morphine .1 (for a total of only .2 lower), and he was almost inconsolable the whole time - screaming, flailing, writhing... the worst yet (since I've been in on the changes anyway). I actually had to end up holding him and feeding him a bottle while they dressed his arms and legs.

It broke my heart. I don't know how they expect us to do it on Tylenol only, but I don't want him to be on strong drugs either. I think the Ativan can be addictive too. I don't know if this will slow us down coming home or not. I know that distraction will work best during dressing changes, but how do you distract a 4-week-old?

Please be in prayer for Jonah tomorrow night if you think about it during his dressing change time (we usually start at 8 pm eastern). We need divine intervention, and I have not been prayerful enough about his pain management. I was going to leave the bandage changes up to Sabrina and OT tomorrow night, so I could come home early, clean a little, and get in bed, but now I doubt I'll be able to leave him. Not that I don't trust them to do it (because I definitely do), but I'm just afraid he'll need me for consolation, and I won't be there. What if he needs me, and I'm not there? I literally can't bear the thought.

Here are a few pictures from the last couple days. Besides his dressing change, he's been a sweet, sweet boy - which I'm pretty sure is his personality. But DON'T mess with him when he doesn't want to be messed with. I really need to brush up on my "dressing a closed fisted hand" and "bandaging a flailing leg" skills. I am NOT smooth.

The tops of his legs are still horrible with new blisters every day. I'm hoping Transfer is on its way tomorrow (although they've told us it will be the beginning of next week before we will get any), because it's just getting worse and worse, and I feel like the Transfer holds better than anything else. Everything else slips down his leg and leaves exposed raw places at the top- we've tried Lite, Mepitel, and Vaseline gauze (in addition to the Transfer). I'm out of Transfer samples, but thanks to those of you who sent me some. I like it the best, but the Lite works well too. His belly is also looking really bad. He also has a new blister on his chest from where he clamped down and decided to hold his breath during bandage change a couple nights ago. The nurse had to rub in a circle on his chest to get him to breathe, so now there's a big blister (three times the size it was this morning) on his chest as a result.

On a brighter note, we are seeing substantial healing in his hands and feet, although to you guys it would probably still look really bad. If you could have only seen the before pictures... I'd like to post pictures of some of what's under the bandages to give you an idea of what Jonah is going through, but I know many of your kids look at the blog and want to see baby Jonah, so I don't really want to post that kind of thing. Plus, it's just sad. But please know that although you see precious pictures of his face, there are many very bad spots under those bandages that need your prayer and God's healing. Thank you for your specific prayers for his little hands and feet. The flesh is mostly pink now instead of red and purple. They are still bleeding some, but a vast improvement over a couple weeks ago.

Okay, now to the pictures.

85 comments:

Oh, I just want to grab him up and squeeze him! He is just so precious. I understand why you can't bear the thought of leaving him tomorrow night ... it's the most basic of instincts to want to stay. Keep the faith, and know that we are all praying, too. Love you so!

Oh my gosh!! How beautiful is he!! He does look really good!! Who is sending you the transfer?? Have you gotten in touch with Bill Cornman at National Rehab - they ship overnight. I have some more transfer if you want me to send you some, just let me know and I can get it in the mail tomorrow!

I am so sorry that Jonah had a bad time during his dressing change - as for distraction - a bottle or sweeties with the paci. Maybe some kind of mobile.

I actually had to take some pain meds tonight, so maybe its something in the stars today??

Good luck tomorrow and I will definantely keep you in my prayers - PLEASE let me know if you need ANYTHING!!

Jonah, you are a blessing! I'm sending out prayers for healing of your beautiful hands and feet.

Patrice, you are doing what you're programmed to do. All us mothers drop whatever we are feeling or doing to be at the side of our child if he is need. You're an excellent mother. But DO take care of yourself.

I used to use bubbles to distract my babies. They are in such awe that they don't know that they're getting a procedure done or getting shots. it works long enough to do what you need to.

With practice you'll be a pro. Lots of hugs and kisses for Baby Jonah, You, and Matt!

It is so nice to have specific things to pray for, but God does know all our prayers, even the ones that don't hit our lips. He hears all of our prayers for healing of little Jonah, for his hands and feet, for his pain management, his risk of infection. I truly believe that when we lift Jonah up to the Lord, the Lord knows all the prayers that are in our heart for this sweet boy. So, don't beat yourself up on "not being prayerful enough about his pain management", the Lord knows, He knows your heart, He hears you!

You do have such a sweet boy and I can't believe the changes that have occurred in him in only 4 short weeks!! God is good!!

Just seeing the blister on his side made me cry! I don't know how you do it...what a sweet boy. I'm so sorry that he has to suffer. I continue to pray multiple times daily for you all. May the Lord bless you both...

Hang in there. When AJ came home from the hospital at six weeks of age - he was finally off of morphine and on only tylenol. He cried through every dressing change - we just had to accept it and get it done. It was like one side of me was Mom and another side was the nurse - I had to turn off the mom side during dressing changes - hope that makes sense. We used music to calm him. By six months we were using children's music videos to distract him - he is a big fan of Veggie Tales and The Wiggles. It gets better but it takes time. He still doesn't like the dressing changes - he might fight and fuss but no more screaming through the entire thing.

I'm so sorry for you and Jonah both that he suffered so much tonight. You are still in our prayers. My heart just breaks for him to be in any kind of pain because he's such a little sweetie. Sending you cyber-hugs and healing thoughts....

Jonah is getting so big! Isn't it amazing how fast they grow. He is in my prayers continuously.

A possible distraction idea for Jonah are the baby Einstein videos. The ones for ( months were made with unfant brain development in mind. My kids started to get mesmerized by them at about 8 wks, though the would sometimes quiet at a little younger. Just an idea:-)

Perhaps you could show the more serious photos by posting them on another site (flickr or photobucket) and putting a link with a warning on this site? Then your readers can get the full impact of the seriousness of Jonah's wounds without scaring kids.

Keep at it, just remember Janel's words that it doesn't hurt EB sufferers as much as you think! Kids who live with pain become remarkably strong and tolerant to it.

What precious new pictures Patrice! I am rejoicing in the small healing of his hands and feet, I am praying harder for the rest of his little body. I will also pray more fervently for the pain management situation. 8pm, the Fugate's will have Jonah covered in prayer. On another note, have you checked MckMama's blog? Her most recent post mentions Jonah and had me in a fit of happy tears!! God is so good!

You are doing a great job being there for him. I couldn't bear leaving either. I will be praying specifically for his pain management, the spot on his chest and his legs today. And that your bandages will arrive sooner than expected.

he is so beautiful!!!!! That face is precious and I know you adore every little bit of him. I'll be praying specifically for you guys at 7 (my time) tonight. God has really been revealing to me that I have got to be on my knees in prayer more and I intend to be praying for you as He leads. Hang in there. THe God of the whole Universe loves you and He is the Great Physician. Many Blessings,daisy (alabama)

I am so EXCITED that you got the cloth diapers :-) And little Jonah looks too adorable for words! I know he's in pain, but I am so impressed at his ability to make it through everything - he is one tough little boy! My hero :-)

I have a crazy question. If his skin doesn't have 'roots' to hold it to his precious body, how are the roots of his hair able to remain attached?Your entire family are in my prayers, as well as his caregivers at Brenners.2shoes

If you haven't read MckMama's blog, the cloth diapers will be on the way as soon as she's able to send them (of course, she's still with Stellan right now). So glad that you'll have a great selection to work from to keep Jonah's tush comfy. I'm thinking this is just another step closer to getting him home!

Thinking of you often, and thank you for your specific prayer requests!

You continue to be in my prayers. It breaks my heart for your family to have to see your baby boy in such pain. He is beyond beautiful! I can't get over what a cute little guy he is! Praying for the Lord's complete healing!

Oh bless his little heart and body..... I want to kiss all his boo boo's. He looks strong though and is SOOOOO cute. Looks older than he is... he is a fighter mommy I can see that. Look at those eyes...

This message was posted on Jonah’s Facebook Support Group page this morning, messages were sent to 359 members and to 109 members of Jonah’s e-mail list.

Jonah Wins Cloth Diapers – Pray for Stellan

Over the weekend we posted a notice and sent out messages about a diaper give away on MckMama’s “My Charming Kids” blog. Here is a quote from a posting MckMama made about 11:30 Tuesday evening from her child’s hospital room (explanation below).

“After so many of you suggested the same fabulous idea, I am in wholehearted agreement that baby Jonah would love our cloth diaper stash. As soon as I can get in touch with his parents, I'll make efforts to send the diapers to cover his sweet bottom.”

Thanks to all of you who took time to post on MckMama’s blog requesting that the diapers go to Jonah. This story also has a sad side, MckMama’s child Stellan was rushed to the hospital Sunday with serious heart problems.

Leigh posted this message on the Facebook Prayer Group Page last night:

Please continue to pray for Jonah and Stellan!

A fellow Facebooker, Jessica Hulbert messaged me with the request that I post this on Jonah's page. She has set up a prayer group for Stellan, infant son of MckMama. Prayer Warriors, please join me in praying for Stellan as well!

Dear Matt and Patrice, Last Wed night I asked our Bible Study group to pray specifically for healing for his hands and feet. I'm so glad that you posted that our prayers are being answered. I am so glad that God is listening to my specific prayers. Love, Barbara

Congrats on winning the diaper stash. My heart is very heavy for baby Stellan and Jonah. I am continuing to pray without ceasing. As I said on MckMama's site, I never dreamed I would be praying so hard for 2 little baby boys I don't even know. I think of all of you so many times during the day. Patrice, babies are not as fragile as you think. Jonah is a fighter and he is a tough little guy. God will help you get through Jonah's bandaging. He is looking great and so alert. Hope you continue to take care of yourself also. May God Bless all of you.

Hang in there...he is so beautiful! My prayers continue for you! Jump over to McKMama...she has cloth diapers for the prize giveaway to give to baby Jonah! Should be real soft against his tender skin. May peace come to Jonah in those dressing changes.

As hard as I know it is on how to wrap 4 week old baby's hand, i do know its recommended you not wrap with a closed fist. For two reasons: 1) his fingers could fuse together from being wrapped together and two his fingers can contract from noting be able to stretch them on his own. The exact thing happened to a little baby near me with simplex. By the time he was 5-6 months old, he could no longer straighten his fingers completely because they had been wrapped like boxers from birth till about 3 months.

The only way I personally know how to wrap fingers individually is to cut mepitel into small strips. wrap one around each finger and in the web spacings and then use 1 inch gauze to wrap with. Do I know its very difficult and frustrating on a infant. Hopefully some of the other EB mom's how wrap their child's hands daily will post some other suggestions for you.

For our daughter we used sugar water and then her bottle and a video (she liked the teletubbies!) to soothe her during dressing changes.

another thing we did was warm up whatever ointment we were using on her so it wouldn't be so cold when it touched her skin (which a lot of babies don't like either). We used a diaper wipe warmer to keep it warm since it was just the write temperature! I know the NICU probably doesn't have one, but maybe when you get home.

Praying continually for sweet baby Jonah and now for Stellan. He is so cute, he does look so alert. I was praising God for the improvement in his tiny little hands and feet. Now praying for the rest of his little body to heal. Praying God wraps his loving arms around Jonah and continues to heal him and to comfort him during his bandage changes. You are such a great mom!!! Praise be to God. God is so good!!!

He is such a beautiful little boy. I'm so sorry he is going through this. I'm thankful to hear that things are looking better.

My daughter used to hold her breath when she was upset - to the point that she would almost pass out. A friend of mine told me to blow in her face because that automatically makes them take a breath. I've done it ever since and it works! Maybe you can try that if he does it again.

Praying hard that Jonah's pain will be minimized and that you can bring him to his home very soon!

Awww, sweet, sweet Jonah. I pray that he is pain-free during his bandage changes. My heart just melts when I see new pictures of him...Jonah is so beautiful! Praying that you are able to get some rest, Jonah's little body adjusts to the lowered amount of morphine, and you are able to bring him home soon.

He is SO super adorable!! ♥ Lots of prayers for pain relief - I know how much it HURTS to see your baby in pain :( I want to tell you this only so you know there's an "other side" to this... my daughter had some post-op pain one time that was so bad it landed her in the PICU (the pain was causing her to breathe shallowly, so her lungs got gunky, and they just could not control it at all even though she was on the max doses of everything). She was on super strong pain meds for two weeks, and detox from that was really traumatic too. We've since had to go through several time periods of having to do medical procedures on her at home that were painful and scary for several months at a time (and she had to be on anti-anxiety meds b/c her blood pressure was high that whole time). When she was a newborn she had several biopsies with no pain meds and SCREAMED - it was so awful to watch. BUT (and this is why I'm telling you this)she is now a COMPLETELY happy, well-adjusted, overly empathetic, easy-going three year old! I was SO afraid that all of those experiences would change her, that she would have lasting trauma from it, that she would not trust people, and that she would remember some of it (she was older than Jonah for most of it)... I think it changed her in that it made her a strong, very empathetic, very in love with God little girl (she reminds ME that we should thank God for helping her be brave!) it did NOT make her any less happy or trusting or anything else. I know how hard it is to watch your baby in so much pain, but I PROMISE the trauma and memory of it will stay with you much longer than it will with him. Kids are insanely resiliant at this age. Saying lots of prayers for BOTH of you!!

I just want you to know, me and all my friends pray for Jonah everyday and think about him all the time. He is such an adorable baby and you all deserve only the best. My thoughts and prayers are with you all.

DEAR PATRICE,MY DEEPEST PRAYERS WILL BE WITH YOU AND JONAH. WHAT STRENGTH YOU HAVE BUT I KNOW THAT EVEN THE STRONGEST NEED TO BE UPLIFTED.IT BREAKS MY HEART THAT SO MANY CHILDREN ARE SUFFERING EITHER BY CANCER OR THINGS AS HORRIFIC AS JONAH.I WAS READING YOUR PROFILE AS THIS WAS MY FIRST TIME TO YOUR BLOG.MY DAUGHTER AND HER BEST FRIEND ARE BOTH BATTLING CANCER. I HAVE TAKEN THE PRAY FOR JONAH BUTTON AND WILL PUT IT ON MY BLOG AND I WILL PUT HIM ON EVERY PRAYER LIST I KNOW.MY LOVE AND PRAYERFUL SUPPORTHUGSdebbie

I love me some Jonah pictures! He is such a beautiful boy. I can't imagine how you feel about his blisters as his mama, because they break my heart. I have been praying specifically for his hands and feet, as I know they were bad when he was born. I will be praying for our little man tonight that the bandage changes go smoothly and painlessly. Hope you are getting some rest too!

He's so handsome!! Know that I have been praying for him! I pray that you will be able to take your little boy home soon!! I want so bad for you to be able to care for him at home and for you both to be comfortable at home. There's no place like home!! Jonah needs to be there with you and Matt!! I'm praying you'll be able to manage his pain!!

I wish I could reach through this computer and give him a big hug and then give you a big hug for being so strong for your little man. You are doing really well mommy. I pray for you and for your little guy every day!

What a handsome, growing little man! Jonah is so precious! Praise the Lord his tiny hands and feet are healing up, even if it is slowly. My children do ask about Jonah first thing each morning and he is in our evening family prayers. We will pray tonight for pain management during his dressing change. And for continued healing and that soon he will be home in his very own bed!The Denny Family in IndianaGrace 7,Simon 5, Maribelle 3 and Ruby 5 mos

He is so beautiful. I just cannot stop staring at him. Everyday I wait for you to post so I will know how he (and you AND matt) are doing. Praying for you and hoping to hear some definitive good news soon about coming home plans :)

Dear Patrice and Matt, I'm excited about reporting to my Bible Study group tonight that our prayers for healing of his hands and feet have been answered. Tonight I will ask for prayers that he will relax his little hands so that the fingers can be bandaged more easily. As always, I pray that he will not be in pain. Barbara

Everyday I continue to read your blog and it just amazes me the progress you guys have come so far. He looks absolutely amazing and it one very handsome little fella! :) I hope and pray that someday soon you will be able to come home.

I will be praying tonight during Jonah's dressing changes. God is hearing our prayers and answering them! I am so glad to hear the report of his little hands and feet! Something I've been praying specifically for! I will continue to pray! Thank you for letting us know specific things we can be praying for for your sweet, sweet Jonah.

Patrice and Matt,I just come in from church and wanted to let you know that our high schoolers stopped our lesson at 8:00 pm to say a prayer for Jonah. Trusting in our merciful Lord for pain free bandage change tonight AND in the coming days.In Prayer,Sandy Moore

I saw a prayer request for Jonah on another blog & I have added his prayer button to my blog.Jonah is so beautiful. Your family & your faith is so inspirational. I said prayers for you a several times today, & especially around 8 est. You all will continue to be in my prayers

Patrice - my son has needed a couple of extra hearing tests and evaluations. The audiologist had great distracting toys. A couple were these little hand-held toys that light up and spin when you push a button. They reminded me of those crazy toys you see at the circus, but much smaller.

I saw something similar in the Easter section at Walgreen's. I know you will need several things in your "bag of tricks" for dressing changes. That may be a good one.

Love the pics!! I'll be praying for the dressing changes. Don't worry about the pictures with the blisters. I have posted pics of Colin on the vent and drainage chest tubes, ect. It really gives everyone an idea of what these babies go through. I don't blame you though if you would rather not post them. We are happy with just seeing his handsome little face. :) Wish I could help more somehow, but I'm praying. Millie and Colin-HLHS

When I asked the crazy question this morning re:hair having roots, I wasn't trying to be crude I was thinking of the tissue regeneration going on at WFUBMC right now.They can grow all sort of tissue,why not skin?Would any doctors from the burn unit be of any help?I know also the hyper-baric chamber is used to heal burn victims by forcing 0xygen into the body.I'm just grabing at air trying to help. Love and prayers for ALL2shoes

We are praying for you, Matt and Jonah. I was so worried last night when I went to bed and there wasn't a new post up (I'm a west coaster). Sorry to hear Jonah had a tough time, but praying that he continues to get stronger and stronger and exceed your wildest hopes!

Someone in the comments mentioned maybe Baby Einstein DVDs might be a good diversion for him. I have a bunch that my two little ones are done watching, if you don't already have some, I would be happy to send ours to you. Feel free to have someone email me and I'll put them in the mail right away.